Hostname: page-component-76fb5796d-wq484 Total loading time: 0 Render date: 2024-04-25T15:11:24.966Z Has data issue: false hasContentIssue false
  • English
  • Français

Patient and public involvement in health technology assessment: update of a systematic review of international experiences

Published online by Cambridge University Press:  05 February 2021

Marie-Pierre Gagnon Open the ORCID record for Marie-Pierre Gagnon [Opens in a new window] ,
Mylène Tantchou Dipankui ,
Thomas G. Poder Open the ORCID record for Thomas G. Poder [Opens in a new window] ,
Julie Payne-Gagnon ,
Gisèle Mbemba  and
Valentina Beretta
Marie-Pierre Gagnon*
Affiliation:
Faculté des sciences infirmières, Université Laval, Québec, Canada Centre de recherche du CHU de Québec-Université Laval, Québec, Canada Centre de recherche en santé durable VITAM, CIUSSS-Capitale Nationale, Québec, Canada
Mylène Tantchou Dipankui
Affiliation:
Faculté des sciences infirmières, Université Laval, Québec, Canada
Thomas G. Poder
Affiliation:
Département de gestion, évaluation et politique de santé, École de Santé Publique de l'Université de Montréal, Université de Montréal, Montréal, Canada Centre de recherche de l'Institut universitaire en santé mentale de Montréal, CIUSSS de l'Est de l’Île de Montréal, Montréal, Canada
Julie Payne-Gagnon
Affiliation:
Faculté des sciences infirmières, Université Laval, Québec, Canada
Gisèle Mbemba
Affiliation:
Faculté des sciences infirmières, Université Laval, Québec, Canada
Valentina Beretta
Affiliation:
Università degli Studi di Pavia, Pavia, Italy
*
Author for correspondence: Marie-Pierre Gagnon, E-mail: marie-pierre.gagnon@fsi.ulaval.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

To summarize current evidence on patient and public involvement (PPI) in health technology assessment (HTA) in order to synthesize the barriers and facilitators, and to propose a framework to assess its impact.

Methods

We conducted an update of a systematic review published in 2011 considering the recent scientific literature (qualitative, quantitative, and mixed-methods studies). We searched papers published between March 2009 (end of the initial search) and December 2019 in five databases using specific search strategies. We identified other publications through citation tracking and contacting authors of previous related studies. Reviewers independently selected relevant studies based on prespecified inclusion and exclusion criteria. We extracted information using a pre-established grid.

Results

We identified a total of 7872 publications from the main search strategy. Ultimately, thirty-one distinct new studies met the inclusion criteria, whereas seventeen studies were included in the previous systematic review. PPI is realized through two main strategies: (i) patients and public members participate directly in decision-making processes (participation) and (ii) patients or public perspectives are solicited to inform decisions (consultation or indirect participation). This review synthesizes the barriers and facilitators to PPI in HTA, and a framework to assess its impact is proposed.

Conclusion

The number of studies on patients or public involvement in HTA has dramatically increased in recent years. Findings from this updated systematic review show that PPI is done mostly through consultation and that direct involvement is less frequent. Several barriers to PPI in HTA exist, notably the lack of information to patients and public about HTA and the lack of guidance and policies to support PPI in HTA.

Keywords

Health technology assessmentPatient and public involvementParticipationConsultationSystematic review
Type
Assessment
Information
International Journal of Technology Assessment in Health Care , Volume 37 , Issue 1 , 2021 , e36
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abelson, J, Bombard, Y, Gauvin, FP, Simeonov, D, Boesveld, S. Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care. 2013;29:282–9.CrossRefGoogle ScholarPubMed
Facey, KM, Bedlington, N, Berglas, S, Bertelsen, N, Single, AN, Thomas, V. Putting patients at the centre of healthcare: Progress and challenges for health technology assessments. The Patient. 2018;11:581–9.CrossRefGoogle ScholarPubMed
Single, AN, Facey, KM, Livingstone, H, Silva, AS. Stories of patient involvement impact in health technology assessments: A discussion paper. Int J Technol Assess Health Care. 2019;35:266–72.CrossRefGoogle ScholarPubMed
Whitty, JA. An international survey of the public engagement practices of health technology assessment organizations. Value in Health. 2013;16:155–63.CrossRefGoogle ScholarPubMed
Abelson, J, Giacomini, M, Lehoux, P, Gauvin, FP. Bringing 'the public' into health technology assessment and coverage policy decisions: From principles to practice. Health Policy. 2007;82:37–50.CrossRefGoogle Scholar
Facey, K, Boivin, A, Gracia, J, Hansen, HP, Scalzo, AL, Mossman, J et al. Patients’ perspectives in health technology assessment: A route to robust evidence and fair deliberation. Int J Technol Assess Health Care. 2010;26:334–40.CrossRefGoogle ScholarPubMed
Gagnon, MP, Desmartis, M, Lepage-Savary, D, Gagnon, J, St-Pierre, M, Rhainds, M et al. Introducing patients’ and the public's perspectives to health technology assessment: A systematic review of international experiences. Int J Technol Assess Health Care. 2011;27:31–42.CrossRefGoogle ScholarPubMed
Boivin, A, Lehoux, P, Lacombe, R, Burgers, J, Grol, R. Involving patients in setting priorities for healthcare improvement: A cluster randomized trial. Implement Sci. 2014;9:24.CrossRefGoogle ScholarPubMed
Gauvin, FP, Abelson, J, Lavis, JN. Evidence brief: Strengthening public and patient engagement in health technology assessment in Ontario. Hamilton, Canada: McMaster Health Forum; 2014.Google Scholar
Bastian, H, Scheibler, F, Knelangen, M, Zschorlich, B, Nasser, M, Waltering, A. Choosing health technology assessment and systematic review topics: The development of priority-setting criteria for patients’ and consumers’ interests. Int J Technol Assess Health Care. 2011;27:348–56.CrossRefGoogle ScholarPubMed
Messina, J, Grainger, DL. A pilot study to identify areas for further improvements in patient and public involvement in health technology assessments for medicines. Patient. 2012;5:199–211.Google ScholarPubMed
Abelson, J, Wagner, F, DeJean, D, Boesveld, S, Gauvin, FP, Bean, S et al. Public and patient involvement in health technology assessment: A framework for action. Int J Technol Assess Health Care. 2016;32:256–64.CrossRefGoogle Scholar
Canadian Institutes of Health Research (CIHR) [Internet]. Patient engagement. Available from: http://www.cihr-irsc.gc.ca/e/45851.htmlGoogle Scholar
Pivik, J, Rode, E, Ward, C. A consumer involvement model for health technology assessment in Canada. Health Policy. 2004;69:253–68.CrossRefGoogle ScholarPubMed
British Medical Association. Patient and public involvement: A tool kit for GPs. London, UK: British Medical Association; 2011.Google Scholar
Health Equality Europe [Internet]. Understanding health technology assessment. 2008. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20030890.Google Scholar
Segal, L. The importance of patient empowerment in health system reform. Health Policy. 1998;44:31–44.CrossRefGoogle ScholarPubMed
European Patients’ Forum. Patient involvement in health technology assessment in Europe - An interim report on EPF survey with HTA agencies; European Patient Forum. Brussels (Belgium); 2013.Google Scholar
Drummond, M, Tarricone, R, Torbica, A. Assessing the added value of health technologies: Reconciling different perspectives. Value in Health. 2013;16:S7–13.CrossRefGoogle ScholarPubMed
Menon, D, Stafinski, T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharm Out. 2011;11:75–89.Google ScholarPubMed
Facey, KM, Hansen, HP. Patient-focused HTAs. Int J Technol Assess Health Care. 2011;27:273–4.CrossRefGoogle ScholarPubMed
Moran, R, Davidson, P. An uneven spread: A review of public involvement in the national institute of health research's health technology assessment program. Int J Technol Assess Health Care. 2011;27:343–7.CrossRefGoogle ScholarPubMed
Pomey, MP, Brouillard, P, Ganache, I, Lambert, L, Boothroyd, L, Collette, C et al. Co-construction of health technology assessment recommendations with patients: An example with cardiac defibrillator replacement. Health Expect. 2020;23:182–92.CrossRefGoogle ScholarPubMed
Tantchou Dipankui, M, Gagnon, MP, Desmartis, M, Légaré, F, Piron, F, Gagnon, J et al. Evaluation of patient involvement in a health technology assessment. Int J Technol Assess Health Care. 2015;31:166–70.CrossRefGoogle Scholar
Rowe, G, Frewer, LJ. Public participation methods: A framework for evaluation. Sci Technol Hum Val. 2000;25:3–29.CrossRefGoogle Scholar
Rowe, G, Marsh, R, Frewer, LJ. Evaluation of a deliberative conference. Sci Technol Hum Val. 2004;29:88–121.CrossRefGoogle Scholar
Abelson, J, Montesanti, S, Li, K, Gauvin, FP, Martin, E. Effective strategies for interactive public engagement in the development of healthcare policies and programs. Ottawa: Canadian Health Services Research Foundation; 2010. p. 1–52.Google Scholar
Moher, D, Liberati, A, Tetzlaff, J, Altman, DG, The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Med 2009;6:e1000097.CrossRefGoogle ScholarPubMed
Gauvin, FP, Abelson, J, Giacomini, M, Eyles, J, Lavis, JN. “It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70:1518–26.CrossRefGoogle ScholarPubMed
Pluye, P, Gagnon, MP, Griffiths, F, Johnson-Lafleur, J. A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud. 2009;46:529–46.CrossRefGoogle ScholarPubMed
Brereton, L, Ingleton, C, Gardiner, C, Goyder, E, Mozygemba, K, Lysdahl, KB. Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven european countries. Palliative Med. 2017;31:181–92.CrossRefGoogle ScholarPubMed
Bombard, Y, Abelson, J, Simeonov, D, Gauvin, FP. Eliciting ethical and social values in health technology assessment: A participatory approach. Soc Sci Med. 2011;73:135–44.CrossRefGoogle ScholarPubMed
Boothe, K. “Getting to the table”: Changing ideas about public and patient involvement in Canadian drug assessment. J Health Polit Policy Law. 44.631–663.CrossRefGoogle Scholar
Cockcroft, EJ, Britten, N, Long, L, Liabo, K. How is knowledge shared in public involvement? A qualitative study of involvement in a health technology assessment. Health Exp. 2019;23:348–57.CrossRefGoogle Scholar
Danner, M, Hummel, JM, Volz, F, van Manen, JG, Wiegard, B, Dintsios, CM. Integrating patients’ views into health technology assessment: Analytic hierarchy process (AHP) as a method to elicit patient preferences. Int J Technol Assess Health Care. 2011;27:369–75.CrossRefGoogle ScholarPubMed
Ettinger, S, Mayer, J, Stanak, M, Wild, C. Patient involvement in European health technology assessment focus group with cardiac patients. Int J Technol Assess Health Care. 2017;33:36–7.CrossRefGoogle Scholar
Fratte, CDF, Passerini, A, Vivori, C, Dalla Palma, P, Guarrera, GM. The relevance of citizen involvement in health technology assessment. A concrete application in the assessment of HPV co-testing in the Autonomous Province of Trento. Epidemiol Biostat Public Health. 2015;12.1–9.Google Scholar
Gagnon, MP, Desmartis, M, Gagnon, J, St-Pierre, M, Gauvin, FP, Rhainds, M et al. Introducing the patient's perspective in hospital health technology assessment (HTA): The views of HTA producers, hospital managers and patients. Health Expect. 2014;17:888–900.CrossRefGoogle ScholarPubMed
Gagnon, MP, Desmartis, M, Gagnon, J, St-Pierre, M, Rhainds, M, Coulombe, M et al. Framework for user involvement in health technology assessment at the local level: Views of health managers, user representatives, and clinicians. Int J Technol Assess Health Care. 2015;31:68–77.CrossRefGoogle ScholarPubMed
Gillespie, F. HTA Report Adaptation – “Valutazione HTA delle ModalitÀ di dialisi in Italia”. 2015.Google Scholar
Hämeen-Anttila, K, Komulainen, J, Enlund, H, Mäkelä, M, Mäkinen, E, Rannanheimo, P et al. Incorporating patient perspectives in health technology assessments and clinical practice guidelines. Res Soc Adm Pharm 2016;12:903–13.CrossRefGoogle ScholarPubMed
Health Quality Ontario. Cognitive behavioural therapy for psychosis: A health technology assessment. Ontario health technology assessment series. Health Quality Ontario; 2018.Google Scholar
Health Quality Ontario. Remote monitoring of implantable cardioverter-defibrillators, cardiac resynchronization therapy and permanent pacemakers: A health technology assessment. Ontario health technology assessment series. Health Quality Ontario; 2018.Google Scholar
Izquierdo, F, Gracia, J, Guerra, M, Blasco, JA, Andradas, E. Health technology assessment-based development of a Spanish breast cancer patient decision aid. Int J Technol Assess Health Care. 2011;27:363–8.CrossRefGoogle ScholarPubMed
Kelly, J, Fearns, N, Heller-Murphy, S. Patient views on antimicrobial dressings in chronic wounds. Br J Nurs. 2016;25:S6–13.CrossRefGoogle ScholarPubMed
Kleme, J, Pohjanoksa-Mäntylä, M, Airaksinen, M, Enlund, H, Kastarinen, H, Peura, P et al. Patient perspective in health technology assessment of pharmaceuticals in Finland. Int J Technol Assess Health Care. 2014;30:306–11.CrossRefGoogle ScholarPubMed
Lopes, E, Street, J, Carter, D, Merlin, T. Involving patients in health technology funding decisions: Stakeholder perspectives on processes used in Australia. Health Expect. 2016;19:331–44.CrossRefGoogle ScholarPubMed
Lo Scalzo, A, Abraha, I, Bonomo, MA, Chiarolla, E, Migliore, A, Paone, S et al. Flash continuous glucose monitoring systems - Rapid HTA report for diabetes subjects in insulin therapy. Rome: Agenas; 2018.Google Scholar
Moreira, T. Understanding the role of patient organizations in health technology assessment. Health Expect. 2015;18:3349–57.CrossRefGoogle ScholarPubMed
Poder, TG, Beffarat, M, Benkhalti, M, Ladouceur, G, Dagenais, P. A discrete choice experiment on preferences of patients with low back pain about non-surgical treatments: Identification, refinement and selection of attributes and levels. Patient Prefer Adherence. 2019;13:933.CrossRefGoogle ScholarPubMed
Poder, TG, Carrier, N, Bédard, SK. Health technology assessment unit processes for the validation of an information tool to involve patients in the safety of their care. Int J Technol Assess Health Care. 2018;34:378–87.CrossRefGoogle ScholarPubMed
Ryan, M, Moran, PS, Harrington, P, Murphy, L, O'Neill, M, Whelan, M et al. Contribution of stakeholder engagement to the impact of a health technology assessment: An Irish case study. Int J Technol Assess Health Care. 2017;33:424–9.CrossRefGoogle ScholarPubMed
Simpson, S, Cook, A, Miles, K. Patient and public involvement in early awareness and alert activities: An example from the United Kingdom. Int J Technol Assess Health Care. 2018;34:10–17.CrossRefGoogle ScholarPubMed
Tantchou Dipankui, M, Gagnon, MP, Desmartis, M, Legare, F, Piron, F, Gagnon, J et al. Patient participation in the assessment of alternatives to restraint and seclusion. Sante Publique. 2014;26:217–26.CrossRefGoogle Scholar
Whitty, JA, Ratcliffe, J, Chen, G, Scuffham, PA. Australian public preferences for the funding of new health technologies: A comparison of discrete choice and profile case best-worst scaling methods. Med Decis Making. 2014;34:638–54.CrossRefGoogle ScholarPubMed
Wortley, S, Tong, A, Howard, K. Community views and perspectives on public engagement in health technology assessment decision making. Aust Health Rev. 2016;41:68–74.CrossRefGoogle Scholar
Bae, EY, Hong, JM, Kwon, HY, Jang, S, Lee, HJ, Bae, S et al. Eight-year experience of using HTA in drug reimbursement: South Korea. Health Policy. 2016;120:612–20.CrossRefGoogle ScholarPubMed
Brereton, L, Wahlster, P, Mozygemba, K, Lysdahl, KB, Burns, J, Polus, S. Stakeholder involvement throughout health technology assessment: An example from palliative care. Int J Technol Assess Health Care. 2017;33:552–61.CrossRefGoogle ScholarPubMed
Gagnon, MP, Wale, J, Wong-Rieger, D, McGowan, R. Involving patients in hospital-based HTA: Experiences, approaches, and future directions. In: Hospital-based health technology assessment. Sampietro-Colom L, Martin J. Cham (Switzerland): Adis; 2016, 345–359.CrossRefGoogle Scholar
Street, JM, Callaghan, P, Braunack-Mayer, AJ, Hiller, JE. Citizens’ perspectives on disinvestment from publicly funded pathology tests: A deliberative forum. Value in Health. 2015;18:1050–6.CrossRefGoogle ScholarPubMed
Wortley, S, Tong, A, Howard, K. Preferences for engagement in health technology assessment decision-making: A nominal group technique with members of the public. BMJ Open. 2016;6.e010265.CrossRefGoogle ScholarPubMed
Poder, TG, Safyanik, C, Fournier, M, Ganache, I, Pomey, MP, Gagnon, MP. Patients, users, caregivers and citizens’ involvement in local health technology assessment unit in Quebec: A survey. Int J Technol Assess Health Care. 2020; First view;1-6.Google ScholarPubMed
Staniszewska, S, Brett, J, Mockford, C, Barber, R. The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27:91–399.CrossRefGoogle ScholarPubMed
Supplementary material: File

Gagnon et al. supplementary material

Gagnon et al. supplementary material

Download Gagnon et al. supplementary material(File)
File 25.2 KB